The Experience and Needs of Living With Home Parenteral Nutrition in Adult Patients: A Meta-Synthesis of Qualitative Studies.

BACKGROUND: Home parenteral nutrition (HPN) can improve the nutritional status of patients with gastrointestinal dysfunction. However, some patients face a series of challenges during its implementation, which significantly affect their quality of life. AIMS: To explore the experience and needs of living with home parenteral nutrition in adult patients. DESIGN: A systematic review and meta-synthesis. METHODS: A search was conducted across multiple databases, including PubMed, Embase, Cochrane Library, Web of Science, Chinese Biomedical Literature Service System, China National Knowledge Infrastructure, Wanfang Database and Wipu Database, to explore the real-life experiences and needs of adult patients receiving HPN. The search covered the period up to March 2024. Qualitative research quality was evaluated using the Joanna Briggs Institute's Australian Centre for Evidence-Based Health Care Quality Assessment Criteria for Qualitative Research. Data synthesis was performed using Thomas and Harden's method of thematic and content analysis. RESULTS: Twelve studies, each offering qualitative data, were analysed, resulting in the identification of four themes: positive experiences of HPN; the interplay of dynamic changes across physical, mental and social levels; self-adjustment to the new normal; and multidimensional needs of patients receiving HPN. CONCLUSIONS: Patients receiving HPN face multiple challenges physically, psychologically and socially. This paper also reveals the supportive needs of patients in adapting to a new lifestyle with HPN. This indicates that healthcare professionals should provide comprehensive, continuous and dynamic supportive medical services to facilitate patients' reintegration and return to normal social life. PATIENT AND PUBLIC INVOLVEMENT: As this study constitutes a meta-synthesis, patient or public contribution is not applicable. REPORTING APPROACH: Adhering to the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) reporting guidelines, this meta-synthesis was conducted.

The Anxiety Burden in Patients with Chronic Intestinal Failure on Long-Term Parenteral Nutrition and in Their Caregivers.

Background and aims: Home parenteral nutrition (HPN) is a life-saving treatment for patients affected by chronic intestinal failure (CIF). Both this clinical condition and its therapy require radical lifestyle modifications, affecting life quality and psychological balance in patients as well as family members. Patient psychological burden has rarely been taken into consideration, not to mention that of caregivers. This study aims to evaluate the levels of anxiety in CIF patients on HPN, and their caregivers, consequently determining their impact on the psychological and physical aspects. Methods: After a brief introductory interview, adult patients on HPN for CIF and their caregivers were asked to fill in the HAMA-A questionnaire. Results: Fifty patients and their respective caregivers were enrolled. Mean HAMA-A scores were similar in patients and caregivers and testified the presence of a mild to severe impact of CIF and HPN in both groups, with a significantly higher impact on female patients and caregivers. After adjusting age, education level, duration of CIF and HPN dependence, and degree of kinship, no differences were revealed in the scores. Conclusions: The study confirms that CIF patients on HPN and their caregivers have a significant anxiety burden independently from the duration of the disease, therefore needing appropriate support.

Home parenteral nutrition, sleep patterns, and depressive symptoms: Secondary analysis of cross-sectional data.

BACKGROUND: Patients receiving home parenteral nutrition (HPN) are known to experience psychological distress and have profoundly disrupted sleep. The aim of this analysis was to examine the relationship between sleep patterns with depressive symptoms and HPN characteristics. METHODS: The study was a secondary analysis of cross-sectional data examining sleep patterns using subjective and objective measures. Sleep was assessed by surveys and 7-day actigraphy. The Patient Health Questionnaire-8 was used to evaluate depressive symptoms. Participants provided information on HPN. Spearman correlations were calculated between sleep measures with depressive symptoms and HPN characteristics. Correlations were further examined in multivariable linear regression models. RESULTS: Thirty-two adults (age = 53 years; 75% female; 94% White) were included. Lower sleep quality (r = 0.54-0.60; P < 0.001) and later sleep timing (r = -0.35; P = 0.049) were correlated with higher depressive symptoms. Sleep patterns were also correlated with several HPN characteristics (r = -0.47 to 0.51). In linear regression models, rate of infusion was associated with sleep duration (ß = -0.004 [0.002] h; P = 0.046) in which each 100 mL/h was associated with 24-min shorter duration. Higher total energy was associated with lower sleep quality (ß = 0.0004 [0.0002] log-unit; P = 0.042), and higher volume was associated with longer sleep onset latency (ß = 0.0006 [0.0003] log-min; P = 0.049). CONCLUSIONS: We provide evidence supporting the link between poor and later sleep with higher depressive symptoms and identify potentially modifiable infusion characteristics (notably, slower rate of infusion and lower total energy and volume) that, on further verification, may support sleep among those receiving HPN.

Important issues in proposing autonomy training in home parenteral nutrition for short bowel syndrome patients: a qualitative insight from the patients' perspectives.

OBJECTIVES: The standard treatment for short bowel syndrome is home parenteral nutrition. Patients' strict adherence to protocols is essential to decrease the risk of complications such as infection or catheter thrombosis. Patient training can even result in complete autonomy in daily care. However, some patients cannot or do not want too much responsibility. However, doctors often encourage them to acquire these skills. Based on qualitative investigations with patients, we wanted to document issues of importance concerning perceptions of autonomy in daily care. METHODS: Semistructured interviews were conducted with 13 adult patients treated by home parenteral nutrition using a maximum variation sampling strategy. We proceeded to a thematic analysis following an inductive approach. RESULTS: After achieving clinical management of symptoms, a good quality of life is within the realm of possibility for short bowel syndrome patients with home parenteral nutrition. In this context, achieving autonomy in home parenteral nutrition could be a lever to sustain patients' quality of life by providing better life control. However, counterintuitively, not all patients aim at reducing constraints by reaching autonomy in home parenteral nutrition. First, they appreciate the social contact with the nurses, which is particularly true among patients who live alone. Second, they can feel safer with the nurse's visits. Regaining freedom was the main motivation for patients in the training program and the main benefit for those who were already autonomous. CONCLUSIONS: Medical teams should consider patients' health locus of control (internal or external) for disease management to support them concerning the choice of autonomy in daily care for parenteral nutrition.

The impact of targeted interventions aimed to improve quality of life in patients receiving home parenteral nutrition: A systematic literature review.

BACKGROUND: Home parenteral nutrition (HPN) is a specialised therapy offered to people suffering from intestinal failure. Underlying disease, HPN complications and limitations of HPN can significantly impact a person's quality-of-life (QOL). The aim of this review was to evaluate the evidence on existing non-surgical/non-pharmacological interventions aimed at improving QOL, clinical, patient-reported and economic outcomes for patients receiving parenteral nutrition therapy at home across adult and paediatric settings. METHODS: Online databases Medline (Ovid), Embase and Cinahl were searched to identify studies published between 1937 and 31 March 2022. Identified studies were appraised using the Cochrane Collaboration risk of bias tool and Grading of Recommendations Assessment, Development and Evaluation (GRADE) assessment. RESULTS: Nine studies were included in this review. Interventions were focused on education (n = 4), telemedicine (n = 2), preparation of infusion mixtures (n = 1), mindfulness-based cognitive therapy (n = 1) and a multi-modal approach (n = 1). Only one study measured QOL before and after the intervention using a validated QOL tool. All studies were assessed at either some, high or critical risk of bias, resulting in low or very low-quality evidence for the interventions evaluated. CONCLUSIONS: The findings from this review highlight the lack of high-quality non-surgical/non-pharmacological studies seeking to improve QOL for people on HPN. Because the majority of people receiving HPN are not eligible for surgical or pharmaceutical treatments, higher quality research using clinical trial design, and research focused on improving QOL is needed to inform healthcare managers about the effectiveness (and value) of alternative service delivery models for this vulnerable patient group.

Impact of home parenteral nutrition on family members: A national multi-centre cross-sectional study.

BACKGROUND & AIMS: Home parenteral nutrition (HPN) is a necessary treatment for patients with chronic, type 3, intestinal failure (IF). HPN often requires lifestyle adaptations, which are likely to affect quality of life (QoL) in both patients and family members. The aim of this study was to identify the level of burden on family members who are involved with HPN care and to understand specific factors that contribute to any burden. METHODS: Patients over the age of 18 and receiving HPN were identified in IF clinics from multiple centres across the U.K. Eligible patients were asked to complete the parenteral nutrition impact questionnaire (PNIQ) to assess their QoL, while family members were asked to complete the burden scale for family caregivers (BSFC). Logistical regression was undertaken giving adjusted odds ratios (aOR). RESULTS: 678 participants completed the survey representing 339 patients with their appointed family member. Mean PNIQ score was 11.53 (S.D. 5.5), representing a moderate impact of HPN on patients' QoL. On the BSFC scale, 23% of family members reported a moderate to very severe subjective burden indicating an increased risk of psychosomatic symptoms. After adjusting for age and gender, predictors of BSFC included: family members self-reported health status using the EuroQol visual analogue scale (aOR 19.91, 95% CI 1.69, 233.99, p = 0.017) and support received by health services (aOR = 5.83, 95% CI = 1.93, 17.56, p = 0.002). Employment status, disease type, number of nights on HPN and length of time on HPN were not associated with BSFC. CONCLUSIONS: Family members with a poor health status or lack of support by health service were more likely to have a moderate to very severe subjective burden. Tailored support from the multi-professional IF team may reduce the burden experienced by family members of people dependent on HPN.

Quality of life in long term survivors of pediatric intestinal transplantation compared with liver transplantation and home parenteral nutrition: A prospective single-center pilot study.

Health-related quality of life (HRQOL) after intestinal transplantation (IT) is important, as many psychological troubles have been reported in these patients on the long term. Our aim was to assess and compare HRQOL of patients after IT to patients after liver transplantation (LT) or on home parenteral nutrition (HPN) for intestinal failure. A cross-sectional study included patients and their parents between 10 and 18 years of age, on HPN for more than 2 years, or who underwent IT or LT, with a graft survival longer than 2 years. Quality of life was explored by Child Health Questionnaire. Thirteen children-parents dyads after IT, 10 after LT, and eight children on HPN completed the survey. Patients were a median age of 14 years old, a median of 10 years post-transplantation or on HPN. Patients after IT scored lower than patients after LT or on HPN in "social limitations due to behavioral difficulties" and in "behavior." They scored higher than those on HPN in "global health." Parents of children after IT scored lower than those after LT in many domains. No relevant correlation with clinical data was found. Our study showed the multi-level impact of IT on quality of life of patients and their parents. It highlights the importance of a regular psychological follow-up for patients, but also of a psychological support for families. Helping the patients to overcome the difficulties at adolescence may improve their mental health in adulthood.

Quality of life in patients and in family members of those receiving home parenteral support with intestinal failure: A systematic review.

BACKGROUND & AIMS: People with type 3 intestinal failure require regular home parenteral support (HPS) for survival. Intestinal failure is a long term condition and HPS is a burdensome treatment so understanding quality of life (QoL) and how people live with HPS over time is essential. The aim of this review was to assess the impact of HPS on QoL in adults receiving HPS and their family members. METHODS: A systematic review (PROSPERO 2020 CRD42020166197) of the literature was performed using MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trails, PsycInfo, Web of Science and PROSPERO. Included articles were hand searched to identify any other relevant studies. Eligibility assessment was performed independently by two reviewers in an unblinded standardised manner. Quality was assessed using appropriate Joanna Briggs Institute critical appraisal tools. Data were extracted independently by two reviewers using predefined data fields. Certainty of evidence was assessed using GradePro. RESULTS: Included in this review were 12 studies with 1236 patients receiving HPS. There were 10 observational studies and 2 randomised controlled trials. Only studies examining QoL in adults receiving HPS were found. There were no studies examining QoL in family carers of these patients. The quality of evidence was graded as low to high and the certainty of evidence for QoL was graded as very low to low. It was not possible to perform a meta-analysis so a narrative review was conducted. All of the studies considered quality of life using validated questionnaires. QoL of patients receiving HPS was lower than the general population regarding physical functioning. Patients had a higher QoL the fewer nights each week they received HPS. CONCLUSIONS: HPS prescriptions seemed to influence QoL. However, the certainty of evidence was very low to low so there is very little to limited confidence about the effect of HPS on patient QoL. Research into family members' QoL is lacking and requires further investigation.

Dealing with loss: food and eating in women with ovarian cancer on parenteral nutrition.

BACKGROUND: Malignant bowel obstruction is a common complication of ovarian cancer, resulting in limited oral intake. Home parenteral nutrition (HPN) may be offered to patients in this condition to meet nutritional requirements. However, it is not known how they experience being unable to eat. The present study reports how patients related to food when receiving HPN. METHODS: The investigation was a qualitative study underpinned by phenomenology with women with advanced ovarian cancer in bowel obstruction receiving parenteral nutrition. Interview transcripts were analysed thematically guided by the techniques of Van Manen. RESULTS: We recruited 20 women to the study. Participants were interviewed a maximum of four times and a total of 39 in-depth longitudinal interviews were conducted. Participants could tolerate minimal amounts of food, if they had a venting gastrostomy. Not being able to eat engendered a sense of sadness and loss, and most women found it challenging to be in the presence of others eating. They adopted strategies to cope, which included fantasising about food and watching cookery programmes. These approaches were not a long-term solution; either participants came to terms with their loss or the strategies became less effective in providing relief. CONCLUSIONS: Home parenteral nutrition meets the nutritional requirements of patients with malignant bowel obstruction but cannot replace the non-nutritive functions of food. Healthcare professionals can offer a patient-centred approach by acknowledging the difficulties that patients may face and, wherever possible, encourage them to focus on the positive benefits of interacting with people rather than the loss of eating on social occasions.

How good is quality-of-life for children receiving home parenteral nutrition? - A pilot study.

BACKGROUND & AIMS: Children on home parenteral nutrition and their parents not only engage with complex nutritional issues but also have to manage difficult social and financial problems with social and clinical support that may not always meet their needs. Baxter's HPN-QOL questionnaire, assesses the QOL of adult patients treated with HPN, and has been developed rigorously using standard guidelines, measuring various dimensions of QOL. Our aim was to use this tool to explore how HPN influences the QOL of paediatric patients. METHODS: The HPN-QOL questionnaire was modified to suit a paediatric HPN population. Data on demographics, aetiology of intestinal failure and duration of HPN were collected from a departmental database. Quality-of-Life grading of functional and symptom scales, HPN specific items and overall QOL Numerical Rating Scales were determined. RESULTS: Fourteen out of 17 families returned the completed questionnaires. QOL was significantly impaired by increased dependency regarding items of daily living such as eating, dressing, washing, and mobility, but was not affected in the domains of school attendance, general fatigue, pain and body image. There were no significant differences in QOL when patients with and without enterostomy were compared. Patients felt well supported by the hospital nutrition team in managing logistics related to HPN. CONCLUSIONS: QOL in HPN patients was not significantly affected by the medical aspects of care. This descriptive study highlights the need for further integration of medical and social care in order to support families of children receiving HPN as QOL was impaired in relation to activities of daily living and social functioning.

An international study of the quality of life of adult patients treated with home parenteral nutrition.

BACKGROUND & AIMS: Home parenteral nutrition-quality of life (HPN-QOL©) is a self-assessment tool for the measurement of QOL in patients on HPN. The aims of this study were: to re-assess the basic psychometric properties of the HPN-QOL© in a multinational sample of adult patients; to provide a description of QOL dimensions by short and long HPN treatment duration; to explore clinical factors potentially associated to QOL scores. METHODS: Patients (n = 699) from 14 countries completed the HPN-QOL©. The questionnaires were analysed to evaluate data completeness, convergent/discriminant validity and internal-consistency reliability. The association of overall QOL and HPN treatment duration as well as other clinical factors were investigated using multivariable linear regression models. RESULTS: The analysis of the multitrait-scaling and internal consistency indicates a good fit with the questionnaire structure for most items. Item discriminant validity correlation was satisfactory and psychometric evaluation of the HPN-QOL© in the different English, French and Italian language patient sub-groups confirmed psychometric equivalence of the three questionnaire versions. The results of the multivariable linear regression showed that QOL scores were significantly associated with HPN duration (better in long-term), underlying disease (better in Crohn's disease and mesenteric ischaemia) and living status (worse in living alone) and, after adjusting for the other factors, with the number of days of HPN infusion per week. CONCLUSIONS: The HPN-QOL©, is a valid tool for measurement of QOL in patients on HPN, to be used in the clinical practice as well as in research.

Health-related quality of life, anxiety, depression and distress of mothers and fathers of children on Home parenteral nutrition.

BACKGROUND & AIMS: Parents of children with intestinal failure, dependent on Home Parenteral Nutrition (HPN), may experience psychosocial problems due to the illness and intensive treatment of their child. Literature concerning psychosocial problems is scarce. Therefore, we aimed to investigate Health-Related Quality of Life (HRQOL), levels of anxiety, depression, distress and everyday problems of these mothers and fathers. METHODS: A multicenter study was conducted among 37 mothers and 25 fathers of 37 children on HPN (response-rate 37/49 = 76%, mean age children = 5.1 years, SD = 4.6). Parents completed three questionnaires to measure different outcomes on the KLIK website (www.hetklikt.nu): the TNO-AZL QOL Questionnaire (TAAQOL) to measure HRQOL, the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression, and the Distress Thermometer for Parents (DT-P) to measure distress. Scores were compared to Dutch reference mothers and fathers using Mann-Whitney U-tests. RESULTS: No differences were found in HRQOL, measured by the TAAQOL, between HPN parents compared to the reference groups, except for the subscale 'depressive emotions' for mothers (p = .01) and 'daily activities' for fathers (p = .04). HPN mothers reported higher levels of depression compared to reference mothers (p = .001). In addition, HPN mothers and fathers reported higher levels of distress than reference mothers (p = .001) and fathers (p = .03). HPN mothers reported significantly more problems in the practical, emotional, cognitive and parenting domains, fathers in the social, emotional and parenting domains. CONCLUSIONS: On HRQOL, anxiety and depression, HPN parents generally did not show much differences compared to reference parents. However, when asked about parental distress and everyday problems, HPN treatment of their child seems highly stressful for some parents and influences daily functioning. Therefore, structural screening for parental psychosocial problems in clinical practice, e.g. using the DT-P, is necessary in order to improve the well-being of both these parents and their children dependent on HPN.

Poor Social Support and Unemployment Are Associated With Negative Affect in Home Parenteral Nutrition-Dependent Patients With Chronic Intestinal Failure.

BACKGROUND: Home parenteral nutrition (HPN) provides life-sustaining treatment for people with chronic intestinal failure (CIF). Poor quality of life is reported in association with the burden of HPN and the underlying condition leading to intestinal failure (IF). However, levels of negative affect (NA), incorporating anxiety and depression, have not been reported in CIF. This study examined the occurrence and risk factors for NA in a large CIF population using the validated Hospital Anxiety & Depression Scale (HADS) and Multidimensional Scale of Perceived Social Support (MSPSS) questionnaires. METHODS: A survey pack including HADS and MSPSS were distributed to patients managed by a specialist IF center. Data from these measures were analyzed against factors including underlying disease, length of time receiving HPN, employment status, and demographics. RESULTS: Of 85 patients who completed this study, 56% had clinical levels of anxiety and/or depression. Linear regression analysis confirmed significant correlations between social support and HADS scores, with poorer perceived social support associated with higher levels of NA (-0.26 MSPSS + 33.24; R2 = 0.29; P < .0001). There were also significant associations between unemployment and higher anxiety (P = .004), depression (P = .008), and NA scores (P = .003). By contrast, there were no significant associations between patient age, duration of time receiving parenteral nutrition, pathophysiological mechanisms of CIF, and NA levels. CONCLUSIONS: Clinical anxiety and depression are common, affecting more than half of patients with CIF. Patients with poor social networks and those of working age who have ceased employment are particularly vulnerable and should be prioritized for psychological support because of their elevated risk.

The active problem solving of patients dependent on home parenteral nutrition: A qualitative analysis.

BACKGROUND & AIMS: People with chronic, type 3, intestinal failure often require long-term home parenteral nutrition (HPN). People receiving HPN have frequent interactions with their healthcare, due to the need for close monitoring and due to recurrent hospital admissions. Individuals' responses to, and interactions with, their health care service provides are poorly described. We conducted a service evaluation to explore people's experiences of HPN-related healthcare interactions in order to identify how service providers can best meet the individualised needs of patients. METHODS: We interviewed ten people receiving HPN. The participants were asked about their healthcare interactions related to HPN. The data were analysed using a qualitative research method known as interpretive phenomenological analysis. This analytical approach is concerned with the meaning that people ascribe to particular events, in this case their HPN-related healthcare interactions. RESULTS: The participants in this study described a range of psychosocial problems related to their HPN healthcare interactions, including reliance, risk and restrictions. Participants' solutions to these problems included adaptation of their routine, self-guardianship and passivity. Sometimes, these solutions generated secondary problems of their own, including concerns with resource use, negative healthcare interactions and conflicts of responsibility. A range of contextual factors influenced how participants interpreted their healthcare interactions and the solutions available to them. These contextual factors included continuity of healthcare professionals, the attitude of staff, and information and knowledge about HPN. CONCLUSIONS: By attending to the individual meaning ascribed to healthcare events, and the contextual factors that surround these events, we have been able to better understand the decisions made by patients dependent on HPN. This suggests that healthcare professionals may also better understand their patients' decision making by attending to the individual meaning that patients ascribe to healthcare events and to contextual factors. We propose a model to describe the process of problem -> resolution -> problem in which participants are actively engaged.

Patients' experiences with home parenteral nutrition: A grounded theory study.

BACKGROUND & AIMS: Parenteral nutrition (PN) provides nourishment and hydration as an intravenous infusion to patients with intestinal failure (IF). The aim of the study is to generate theory that explains the experiences of adult patients living with home parenteral nutrition (HPN) and complex medication regimens. METHODS: A grounded theory methodology was used to explore the experiences of twelve patients receiving HPN. A semi-structured interview was conducted and recorded in each participant's home setting. Each interview was transcribed verbatim. The simultaneous process of data collection and analysis was followed reflecting the principles of the constant comparative approach. RESULTS: A total of 15 patients gave written consent, with 12 of them agreeing to be interviewed. All the participants had previously undergone surgery as a result of chronic ill health or sudden illness. Analysis revealed two core categories: stoma and HPN, and these were supported by the subcategories: maintaining stoma output, access to toilets, managing dietary changes, maintaining the HPN infusion routine, access to technical help to set up an HPN infusion, mobility with HPN equipment and general health changes. The strategy of living with loss was demonstrated by all the participants, and this was supported by the action strategies of maintaining daily activities and social interactions. CONCLUSIONS: This study generates new understanding and insight into the views and experiences of patients receiving HPN in the UK. The findings from these participants have been shown to resonate with the Kubler-Ross Model [1] of the five stages of grief. The theory of living with loss was generated by the use of a grounded theory methodology. This small scale exploratory study reveals opportunities for improvements in practice to be considered by the nutrition support team (NST) and other healthcare professionals involved in the patient's hospital stay prior to discharge on HPN.

Development and validation of the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric outcome measure for Home Parenteral Nutrition.

BACKGROUND & AIMS: Patients with Type 3 Intestinal Failure (IF) who need Home Parenteral Nutrition (HPN) face several clinical, psychological and social problems. The study was designed to produce and test the first patient-centric measure for HPN ('PNIQ: Parenteral Nutrition Impact Questionnaire'). The new measure focused on the extent to which patients were able to fulfil their human needs. METHODS: Questionnaire content was derived from the analysis of transcripts of interviews conducted with UK HPN patients. Cognitive debriefing interviews (CDIs) were performed to ensure patients found the draft scale clear, relevant and accessible. Finally, a test--retest postal validation survey was conducted to reduce the number of items in the scale and to ensure that; it was unidimensional, reproducible and had construct validity. RESULTS: The 30 interview transcripts were analysed to identify issues related to a wide range of needs. Fifteen CDIs showed that patients found the draft scale easy to complete and highly relevant. The postal survey included 233 patients on HPN recruited through two IF units. Items were rejected if they did not fit the Rasch model, had too similar content to other items or displayed differential item functioning related to age, gender or underlying mechanism of IF. A 20-item unidimensional scale was identified with high internal consistency (0.91) and test-retest reliability (0.92). Scores on PNIQ correlated moderately highly with social isolation, emotional reactions and energy level and were related to perceived interference on life of HPN. The underlying cause of IF did not influence the way the scale worked. CONCLUSIONS: The PNIQ is a scientifically rigorous, unidimensional outcome measure that provides a complete assessment of the effect of HPN on everyday life. It will prove useful for measuring patient value in clinical practice and for determining outcome in clinical trials, audit, economic evaluations and outcomes-based reimbursement.

Burden assessment in caregivers of patients with home artificial nutrition: a need and a challenge.

BACKGROUND/OBJECTIVES: Caregiving can be a stressful task with severe consequences on caregivers' health. Our aim was to evaluate the profile and the burden of caregivers of patients with home artificial nutrition (HAN) in our area. SUBJECTS/METHODS: We conducted a prospective observational study of patients who had started HAN over a period of a year (n=573) and their home caregivers (n=103). Epidemiological characteristics of the patients and the type of HAN were registered. Caregivers' profile data (gender, age and degree of kinship) and Zarit Burden Assessments were recorded. RESULTS: Care recipients had a median age of 79.0 (IQR 87) years, neurological and oncological diseases in 50% and a high rate of mobility limitations (80%). Oral supplements with high-calorie formulas were predominant (60%). The usual caregiver profile was a patient's daughter with a mean age of 53.1 (s.d. 13.4) years acting as the primary caregiver. Burden was absent in 49.5%, light in 18.4% and intense in 32% of caregivers. Intense burden was more frequent in oral over enteral nutrition (42% versus 22.6%; P=0.036). Supplementary nutrition was also associated with higher caregiver burden scores compared with complete diets. In patients with functional limitations, a tendency toward a slightly higher burden was observed. No differences in caregiver burden were detected according to other patient or caregiver characteristics. CONCLUSIONS: HAN type appears to be a factor influencing caregiver burden and therefore, evaluation of caregiver burden should be part of HAN programs.

Travelling With Children on Home Parenteral Nutrition.

BACKGROUND: Home parenteral nutrition (HPN) is an established therapy in children with intestinal failure. Parenteral nutrition (PN) management allows most paediatric patients to participate in age-appropriate activities; however, HPN may lead to significant restrictions, particularly going on holiday. We aimed to identify sociodemographic and illness-specific variables that influence if and how families with children on HPN travel. METHODS: A standardised questionnaire was sent to all 40 children on HPN within a large tertiary intestinal failure centre in the United Kingdom. Depending on whether the family had/had not been on holiday since their child had started HPN, questions were asked to understand the reasons for not travelling or to gather information about individual travel experiences. RESULTS: A total of 30 children were enrolled, 20 of 30 went at least once on holiday, and 5 of 30 travelled more than once per year, 70% travelled outside Britain. Going on vacation was more common, the longer the child had been on HPN (P = 0.022); hours spent on PN tolerance of enteral feeds or the child's age did not influence travel behaviour; 80% of parents who went on vacation had a good/worthy experience, 95% would travel again. The biggest reported obstacle was the transportation of PN bags. Ten families sacrificed a holiday over fear that it may be difficult to arrange or because of the child's unstable medical condition. CONCLUSIONS: A significant proportion of families chose to go on holiday away from home despite their child being on HPN. The experience is considered good by most.

Psychosocial impact of intestinal failure: a familial perspective.

Intestinal failure is a complicated long-term condition that can have profound physical and psychosocial consequences for a patient's life. Hospitalisation can be long, with many distressing and unpleasant medical procedures being endured. Patients often have to deal with large volumes of unmanageable faecal fluid from stomas or fistulae and usually require home parenteral nutrition (HPN) for the remainder of their life. The literature focuses on how patients often have to tolerate long periods of suffering, which can be the basis for significant emotional anguish. It also addresses how the condition can contribute to myriad psychosocial difficulties, which can have devastating effects on their body image and quality of life. However, there is a lack of information regarding the effects of this condition on the family, who not only have to provide ongoing support for the patient, but also have to attempt to function normally while coping with their own fears and emotions. This article reviews the experiences of two patients, father and daughter, living with intestinal failure; it discusses their experiences and reveals how they cope with the physical aspects. It also addresses how the condition can effect psychosocial disturbances, not only for them but for those living closely with them. The article addresses ways that nurses could develop their relationship with the patient, enabling them to recognise and act early on signs of emotional malady.